When Youre the Caregiver

Learn everything you need to know about taking care of a loved one

By Richard Laliberte

The day I flew home after Dad died, I found Mom in a state of confusion. Her dementia had not yet progressed to the point where she needed care in a facility, but when the family brought in full-time caregivers to help with Dad, we all realized Mom couldn't be left alone in the house, either. I stayed in her room that night, bunking awkwardly on Dad's hospital-style bed, hoping Mom would feel less alone. Sitting with me before she turned in, she tried to grasp the implications of Dad's death. "What will I do?" she said.

It was the beginning of a long road that started with new round-the-clock hired caregivers. Over the next eight years, as her cognitive abilities declined, Mom moved in with my sister and her family until the strain on the household became too great. She then went to an assisted living unit and eventually entered the nursing home where she lives today.

My siblings who lived near her took primary responsibility for everythingfrom her immediate care to selling the housewhile I mainly watched guiltily from a 1,000-mile distance. But sitting with her that night, trying to be reassuring and focused on the now, I had no idea what lay ahead.

"There's a continuum of ways people become caregivers. Often a loved one suffers a stroke, accident or fall or a chronic condition worsens, and people are thrust into a situation. But few plan for it as well as they could," says Leah Eskenazi, director of operations and planning for the Family Caregiver Alliance: National Center on Caregiving.

As Americans become older and live longer, more and more of us are suddenly finding ourselves in this situation. The number of adults helping a parent personally or financially has tripled in the past 15 years, according to a recent study by MetLife, the National Alliance for Caregiving (NAC) and New York Medical College. Most caregivers (66%) are women in their late 40s caring for a mother or other female relative, but some 14% help another adult age 49 or younger. All told, an estimated 36 million U.S. households have at least one person who's a caregiver, and 3 in 10 of them have been doing it for more than five years.

Inevitably, the demands take a physical and emotional toll, and caregivers are more likely to say their health is fair or poor. Yet caregiving does have its rewards. "It can actually improve relationships with parents, create positive memories and foster peace of mind," says Eskenazi. "The challenge is to maintain balance and not lose track of your own needs." To help you do that, read on to learn how to navigate the common caregiving milestones so you'll be prepared for what might happen before it does.

"Is everything OK?"

Adult children often don't realize aging parents need care until a family get-together. "I call it the holiday eye-opener," says Larry Minnix, president and CEO of LeadingAge, an advocacy organization for aging adults and their caregivers (formerly the American Association of Homes and Services for the Aging). "It's often when the family's together in one place that everyone realizes Dad isn't remembering things or Mom's house has become unusually unkempt." Trouble signs: food spoiling in the refrigerator, always finding parents dressed in the same clothes, stacks of papers or mail, left-on appliances like a stove, and an unusually messy house or yardwhich can suggest problems handling everyday tasks.

Talk with your parents about medical and financial issues. A good first step is to ask them for a list of all the medications they're taking and their doctors' contact info. Then you can segue into the tougher questions such as living wills and healthcare proxies. "I finally said to my parents, 'If something happens, I have no information to go on to carry out your preferences, so I would like us all to sit down and talk,'" says Eskenazi, a social worker by training.

Other crucial questions include where they keep important papers and whether they have a safe deposit box. They should also sign release forms allowing doctors to share private medical information with you. And your family needs to work out who should have power of attorney if your parents are unable to make competent decisions for themselves.

Ask the doctors to give an overview. If your family member is diagnosed with a condition, find out their prognosis and what's involved. Many diseases like Alzheimer's, Parkinson's and cancer can follow a predictable arc, but even if they don't, understanding the likely progress of the disease helps you plan ahead.

Evaluate whether they can stay in their home. "The vast majority of people want to age where they've always lived," says Gail Gibson Hunt, CEO of the National Alliance for Caregiving. Basic safety measures can go a long way toward making that possible: · Install grab bars in bathrooms and showers, and put raised seats on toilets. · Turn down the water heater temperature to avoid scalding. · Get rid of tripping hazards such as throw rugs and power cords. · Put brighter bulbs into lamps, especially in walkways. · Place no-slip adhesive strips on steps and slippery surfaces such as bath tile and shower floors. · Suggest a wearable alarm with a button to call for assistance.

For guidance on assessing what help your loved one needs, go to CaregiversLibrary.org for a needs assessment worksheet and in-home care options.

Be realistic about your ability to help out. For example, if a parent needs to be lifted and you have a bad back or can't be with him all day, you may need to hire help. To find an agency that provides skilled workers, go to the National Association for Home Care & Hospice at nahc.org, and type your city and state into their Agency Locator. (Agencies screen and often train caregivers who may be covered by Medicaid or long-term care insurance.)

You can also privately hire a caregiver, which can be less expensive, since you eliminate agency fees (but you may have to pay their employment taxes; check with your accountant). Networks of friends, neighbors and religious or community organizations like the local senior center, YMCA or Jewish Community Center (JCC) are good sources to help you find reliable, skilled caregivers. Your local Area Agency on Aging can give you an idea of going rates.

"Why don't you move in?"

Having the person you're caring for move in can work fabulously. But think carefully about taking someone far from her community. "Knowing friends, neighbors and people in the area can be important," Eskenazi says. "Someone with no network becomes totally dependent on you for physical demands and for all the social and emotional aspects of his well-being."

Figure out how well your loved one can function day-to-day.A healthcare professional can assess her based on nationally recognized criteria known as IADLsinstrumental activities of daily living. (Ask if your insurance pays for an evaluation.) Documenting how much assistance she needs to bathe, dress, eat, walk, use the toilet and handle activities like shopping, laundry or taking medication can help gauge whether or not you can take care of your loved one in your home and her eligibility for services. For example, someone who qualifies for nursing home care may be able to get services that help him stay in his own home from a program called PACE (Program of All-Inclusive Care for the Elderly), available through Medicare and Medicaid in some states.

For an overview of resources in your area, click on your state on the Family Caregiver Alliance's Family Care Navigator at Caregiver.org. The site also answers common questions such as how to get help when you need a break or how to take time off work to care for a loved one.

Map out the physical and emotional factors. Questions to consider: Where will your loved one sleep? Can you set up her own living space so she'll have some privacy or independence? Given your past relationship, can you get along? Can you both accept that you're the boss? Are you comfortable handling personal care like bathing or changing an adult diaper?

Include the care receiver in the conversation as much as you can. Does she really want to live with you? And be sure to gauge the impact on your family. "If a teen is asked to give up a room so Grandma can stay, there may be issues to address before she moves in," Eskenazi says.

Come to an agreement about who pays what. Go over questions such as: Will a parent help pay living expenses? Will siblings pitch in? Which costs are shared and which ones will you pay out of pocket? Also work with your other family members to create a schedule that allows for periodic breaks, and figure out who will care for your loved one when you go on vacation or have to deal with an emergency.

"We need to consider a home."

Not everyone can accommodate a live-in loved one. And many who do it initially find that it becomes too overwhelming. "There's a realization that this is beyond what you signed on for," says Hunt. A caregiver who's persistently depressed (unable to get out of bed, feeling hopeless and sad on most days) is one sign that it's time to find a new arrangement. Other indications: "The ailing person no longer recognizing you or becoming incontinent are often tipping points," says Eskenazi. Before starting your search, you, your loved one and family members involved should sit down with a financial advisor to discuss what funds you have and how long they'll last.

Check the Eldercare Locator from the U.S. Administration on Aging (Eldercare.gov; 800-677-1116). Searching by the type of service you need and your zip code will provide a list of agencies (such as your local Area Agency on Aging) that can help you find and evaluate local facilities. If the person you're caring for is on the younger side, try starting with the local United Way, which can help sort through services available in their community. A quick guide:

Continuing care retirement communitieswork like insurance policies: Residents buy in when they're healthy, often make a large payment up front and then pay a monthly fee. People live independently in an apartment, but assisted living and nursing services are available.

Assisted living facilities help residents with daily living but don't give medical care. Generally, people get their own apartment and have access to a communal meal plan and group activities. Many facilities have special wings for people with dementia.

When choosing a facility, ask a lot of questions. Talk to administrators and workers who actually provide care. "Ask if the facility has its own staff of nurses and healthcare providers," Minnix says. "If they rely on rent-a-nurses or other outside agencies, that's not a good sign." Look for a staff turnover rate below about 30% and key leaders (such as the administrator and director of nursing) who've been in place for at least several years, he suggests. Also ask:

Who owns the facility? Often nursing homes have a donor-funded endowment or are supported by a larger organization such as a religious institution, which tells you others stand behind the facility.

What are all the costs? Are there upfront fees and/or monthly fees? What services can be added on later?

How do you handle emergencies? Some facilities take their residents directly to one specific hospital; others have trained medical staff on site.

What happens if you run out of money? Medicaid usually kicks in when resources are depleted, but it may not cover all services.

Take mental notes on what you see. Are people having fun? Is there a lot going on? Is the dining service appealing? Can you see yourself and/or your kids enjoying a visit there? "There's a stigma against senior housing, but often when I visit assisted living or new facilities for continuing care, I think, 'I want to move in here!' There's a full roster of social activities, art and exercise classes, transportation for shopping," says Joe Buckheit, founder and president of AgingCare.com, an online support community for caregivers. "Caregiving involves many important, life-changing decisions. Caregivers and their families need to explore as many options as they can to figure out what works for everyone."

RICHARD LALIBERTE is an award-winning health and medical writer whose work has appeared in The NewYork Times Magazine and other publications.

"I feel proud to be able to give back to my parents by taking care of my mother. I'm happy that I'm able to live out the principles and values that my parents modeled for me," says Julie Baldocchi, a 48-year-old from San Francisco.

"We have three generations under our roof," says work-at-home bookkeeper Valerie Mazur of Monaca, PA, whose 75-year-old mother has lived on and off with her, her husband and their 12- and 9-year-old daughters through a seemingly endless series of surgeries and health problems. "I can usually work in the morning when the kids are in school and Mom sleeps, but otherwise, I'm generally taking care of my mother," Valerie says.

Can I get paid for caregiving?

In some states, there's a program known as Cash and Counseling, or participant-direct programs, in which seniors who qualify for Medicaid can receive funds to pay their caregiverswhether they're friends, family members or a visiting nurse service. Medicaid makes an assessment to figure out how many hours of care each month will be covered and then pays that amount directly to the senior. In some states, the caregiver may have a say if she has power of attorney and is already making decisions on behalf of a loved one. Go to Medicaid.gov and click on your state to find out if it participates.

where to find help

Eldercare LocatorElderCare.gov; 800-677-1116 Call or type your zip code or city online to search for services in your community.

Family Caregiver Alliance: National Center for CaregivingCaregiver.orgClick on your state on the Family Care Navigator map to locate government, nonprofit and private services in your area.

LeadingAgeLeadingAge.orgFeatures a search function that helps you find care facilities that offer a variety of services in your area.

Lotsa Helping HandsLotsaHelpingHands.comPeople who ask, "How can I help?" can sign on to a Web-based community you create that matches volunteers with tasks and keeps members informed of everything that's going on with the person who's being cared for.

National Alliance for CaregivingCaregiving.orgOffers a wide range of research, information and resourcessuch as a questionnaire that helps you assess your own health.

SNAP for SeniorsSNAPforSeniors.com for senior facilities using a variety of criteria such as type of home, apartment size, memory care services and payment options.

Visiting Nurse Associations of Americavnaa.orgClick on your state to find at-home help.

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